Cancer is a dreadful disease which affects not just patients but takes down the whole family with it, to abysmal depths of darkness & void. Majority unlucky succumb to it but few who are lucky & fight with it, succeed to become Victor.

Anyone who has seen Cancer patients understand how painful it is to live with Cancer, its suffering, every other day, new situation, different side effects, financial & emotional drain-out while helplessly seeing those unanswerable questions in family members eyes & especially when you have a small child. But Kusum Malik Tomar and Vivek Tomar (Kusum’s husband) did not allow it to break them and never lost hope. Kusum and Vivek have shown tremendous courage to not only fight with this dreadful disease but also to fight with issues in the healthcare system of India, and helped thousands of Cancer patients.

Kusum, a never-smoker, at age of 29, a mother of 3 years old son, in 2012, who was living in small town of India, was diagnosed with Stage 4 Lung cancer metastatic to Brain and other parts of body including Bones, Ovaries, Uterus, Adnexa, Stomach. Kusum had a rare type of Lung Cancer which is Non-Small Cell Lung Cancer (NSCLC) with Anaplastic Lymphoma Kinase (ALK) gene mutation/rearrangement. Given 6 months to 1 year life expectancy, Kusum has celebrated her 7 year survival with Stage IV cancer & at that time, she was the longest survivor at Stage 4 for ALK Lung Cancer mutation in India.

However in those 7 years, she has almost lost her life at least 5 times, as all available medicines in India were exhausted & she did not have access to the latest medicines & treatment for her type of cancer, which was available in many other countries but India. It was so frustrating & helpless to see your loved one in severe pain and struggling for survival, as you do not have access to a medicine which could save her but  available in many other countries. To get access to those latest medicines in India to save Kusum was an uphill and painful task for Vivek. This scenario and cancer patients struggle to survive, made Vivek and Kusum an active, passionate advocate for ‘Lung Cancer’, ‘Clinical Trials’, ‘Cancer Research’ & ‘Timely Access to Latest Treatment’  in India. We have been working under the name of “Rise To Survive Cancer” a patient advocacy initiative since 2014. 

Informed patients are key to survival in Cancer and patient support group/ NGO play key roles here. However even at patient level, there was not a dedicated lung cancer patient support group in India at that time but there were many available for breast cancer, blood cancer etc. Therefore Kusum and Vivek has co-founded “ALK Positive India” which is India’s first oncogene focused Lung Cancer patient support group. This patient support group is part of global community of ALK positive lung cancer is 80 plus countries.

After 7 long years of fighting with stage IV cancer, unfortunately Kusum passed away on 5th Feb 2019 and left this world physically. Till her last breath, she was smiling and sharing hope and did not stop advocacy for fellow Cancer patients. In her honor, Vivek and her son “Suryansh” has continued their mission, dedicating himself to patient advocacy.

As we have experienced and as we strongly believe that Cancer is Not an End, if Kusum was continued to Survive and Live Quality Life at Stage IV Cancer (in Lungs to Brain, Bones & other parts of body) for such long years with Hope, Courage, Clinical Research and Latest Treatment….SO CAN EVERYONE…..Just one has to Rise and become Advocate for themselves…One has to Rise to Survive Cancer. 

In our journey to fight with cancer, improve the healthcare system for all, ensure access to the latest treatment in India, help in navigating right treatment, we are able to help to many thousands patients…and it is so satisfying to see that we were able to contribute to save thousands of cancer patients life in India. This journey is long but until we achieve the best treatment and support for cancer patients in India – as Vivek committed, echoing Kusum’s words, “Losing is not an option.”

Today, Vivek in his volunteer work capacity, outside his professional commitments, working as :

• Patient Research Advocate for Cancer and Patient Advocate for Lung Cancer and Timely Access to Latest Treatment in India.
• Advisor as patient advocate for Government of India, Government of State of Punjab, Non-profit, Research centres and Pharma Cos, on Cancer, Research & Care.
• Co-founder ‘Rise to Survive Cancer’ a Patient Advocacy initiative and ‘ALK Positive India’ India’s 1st Oncogene-Focused Patient support group. 
• Able to bring many Cancer medicines in India at record time and at lost cost, which is helping to save many thousand lives of cancer patients in India.
• Developing and delivering courses in partnership with Government of India and non-profits-  for healthcare professionals and in general public on patients perspectives and patient advocacy.
• Guest faculty for Patient Advocacy course at SPJIMR (one of India’s Top 5 management institute), Rare Cancer Australia, Sangath NGO (for ethics in clinical research) and Ministry of Education (Government of India).
• Member of National Cancer Grid India and IASLC.
• Vivek is keynote speaker and panelist at many esteemed national and International conferences, events, and workshops while representing India’s patients voice and doing advocacy work. You can found details of these events and Vivek involvement at home page of risetosurvivecancer.com
• Vivek and Suryansh ‘run for cause’ in many running events to raise awareness for Clinical Trials, Cancer Research and Lung Cancer.
• Some few firsts:
  • Vivek and Kusum as First Lung Cancer Patient Advocate of India
  • Vivek and Kusum as First Patient Research Advocate of India
  • Vivek as First patient advocate from India who received the International Patient Advocacy Award at the World Lung Cancer Conference in Canada 2018
  • Vivek as First patient advocate from India who received the STARS Patient Research Advocacy Award at the World Lung Cancer Conference in Spain 2015
  • Vivek as First patient advocate from India invited as speaker at the World Lung Cancer Conference in 2021 to raise problems of this part of the world in front of the global community.
  • Vivek as First patient advocate from India invited as key note speaker at National Lung Cancer Conference of India 2020 to raise India lung cancer patients community
  • Vivek as first patient advocate from India to do workshop for patient advocates, oncologists, researchers of many countries of APAC at Asia Lung Cancer Conference 2024, and first-ever PAN Africa Lung Cancer Conference 2025.
  • Vivek as First patient advocate from India to became part of international advisory board for Cancer Research for Government of India and for lung cancer for Government of Punjab.
  • Kusum and Vivek co-founded India’s first oncogene focused patient support group i.e. ALK Positive Lung Cancer Patients and Caregiver support group.
  • Kusum was first patient from India to participate in 6 research medicines/ clinical trials for new cancer medicines access for patients of India.

Kusum and Vivek’s story of love, hope, courage, navigating complex India healthcare system, research, and access to latest treatment and dedication to helping others has inspired millions. Their advocacy work has become a beacon of hope for countless cancer patients, and their legacy continues to drive change in India’s healthcare system.

Both ALK Positive India patient support group and Rise To Surivive Cancer patient advocacy initiative, along with all other advacacy initaives started by Vivek is registered under “Kusum Memorial Cancer Foundation” as per relevant Indian laws. Below is a highlight of some of the advocacy and patient support work they have done & are doing and media coverage.

For further updates and work done/ being done, please read our blogs at home page of risetosurvivecancer.com

> Recipient of “International Patient Advocacy Award 2018” at ‘World Lung Cancer Conference’ in Toronto, Canada

In recognition of his work on behalf of lung cancer patients in India and globally, Vivek was honored with the prestigious “International Patient Advocacy Award” at the 19th World Conference on Lung Cancer in Toronto, Canada.

> Appointed in ‘Advisory Board for Cancer Research by Government of India’ and to the ‘Punjab State Oncology Expert Committee by the Government of State of Punjab, India’

Vivek was appointed in Advisory Board by Government of India for an ambitious joint Cancer Research project between Cancer Research UK (which is the largest cancer research funder in the UK) and Department of Biotechnology, Ministry of Science and Technology, Government of India. 

Vivek has also been appointed to the Punjab State Oncology Expert Committee by the Government of State of Punjab, India to establish, review, and adopt policies that will shape Standard Treatment Guidelines for common cancers, including Breast, Lung, Cervical, Oral & Lip, and Hepato-cellular Carcinoma.

 

> Bringing new / latest Cancer medicines to India

Bringing the latest medicines to India is an uphill battle, but when all available treatments were exhausted and Kusum’s life was on the line, Vivek tirelessly collaborated with various stakeholders for months. His relentless efforts led to the introduction of two cutting-edge drugs, “Ceritinib” and “Alectinib,” making Kusum the first patient in India to receive these life-saving medications. Moreover, Kusum took part in six clinical trials, contributing to research that will benefit future patients.

We are proud to announce that today, all ALK lung cancer treatments available worldwide are now also accessible in India. Thousand of ALK lung cancer patients now have multiple options for advanced molecular therapies within India, at much more affordable costs.

> Co-founded “ALK Positive India” – India’s first oncogene focused patient support group for Lung Cancer

Kusum and Vivek co-founded ALK Positive India, India’s first patient support group dedicated to Lung Cancer and first oncogene focused support group for Non-Small Cell Lung Cancer (NSCLC) patients and caregivers affected with the Anaplastic Lymphoma Kinase (ALK) gene mutation/rearrangement.
In addition to support the patients & caregivers, it is also perform awareness, education & advocacy for ALK Lung Cancer while building partnerships with Clinicians, Researchers, Industry stakeholders and Organizations with similar goals.

For more details, visit https://risetosurvivecancer.com/alk-positive-india/

> Partnership with WHO and world’s leading experts on Cancer Research in Lower Middle Income Countries (LMICs)

Vivek was co-author for an important paper on cancer research in low- and middle-income countries (LMICs), which was published in one of the world’s leading journals, Nature Medicine (impact factor: 53.44). He co-authored this paper alongside the Chief Scientist of the WHO and esteemed scientists and experts from renowned institutions such as Tata Memorial Centre, the National Cancer Institute (NCI) USA, the University of Oxford, Harvard University, King’s College London, Queen’s University in Canada, the University of North Carolina, the National Cancer Institute of Sri Lanka, as well as researchers and oncologists from Turkey, Nepal, Kenya, Uganda, Malaysia, Ghana, and France. This perspective paper is expected to serve as a guiding document in global cancer research policy, particularly for LMICs. As the only patient advocate involved in this initiative, Vivek had the unique opportunity to collaborate with some of the world’s leading minds to shape a better future for cancer patients and research worldwide.

A snapshot of the article is attached, and you can access the full paper here. We hope this article resonates with you and inspires you to join this initiative, ensuring that no one—especially in LMICs—is left behind, and that everyone benefits from advancements in cancer research.

> Kusum and Vivek story as Cover story by “The Week” – largest circulated English news magazine in India

India’s largest circulated English magazine “The Week” did a Cover story “Trial, and error” while referring Kusum’s story & fight as published on 22 Jan 2017

http://www.theweek.in/health/cover/clinical-trials-research-india.html

> Ecosystem for R&D, Innovation & Start-Up in India

Vivek is working with policy makers, industry and government(s) to create better ecosystem for R&D, and innovation in India. In this initiative, Vivek was invited by FICCI (Federation of Indian Chambers of Commerce & Industry) and Government of India, to become panelist and speaker at “India Pharma 2020“ summit in Gandhinagar, Gujarat for an important topic for cancer patients i.e.  “Ecosystem for R&D, Innovation & Start-Up in India”. Vivek raised to make patients as partner in eco-system along with Government, Industry, Academics and Clinicians.

> Zee News – Leading Hindi national TV NEWS channel

Kusum was interviewed by India’s one of the national Hindi news channel on her cancer journey and her experience with clinical trials in India, as part of her advocacy efforts. 

> The Hindu – Leading daily English Newspaper

After 8 months of paralysis attack, when Kusum ran 3 km in an running event to raise awareness on cancer, research, and motivate other patients, it was covered by India’s most selling daily English Newspaper  ‘The Hindu’ under story title “Staying positive and hopeful” on NOVEMBER 13, 2017. Link below:

http://www.thehindu.com/life-and-style/fitness/staying-positive-and-hopeful/article20378883.ece

> At FDA Bhawan with DCGI, Joint Secretary Ministry of Health and other key stakeholders

Vivek and Kusum represent patients at a very important meeting held at India CDSCO/ FDA office. The meeting was attended by Joint Secretary, Ministry of Health, Govt of India; DCGI, JDCI, DDCIs and ADCs from CDSCO in full attendance; Doctors from AIIMS, Medanta, Sir Gangaram, RGCI and Industry representation from major Pharma companies.

>  The Quint

Internationally renowned news agency ‘The Quint‘ (winner of the three Ramnath Goenka Excellence in Journalism Awards and two Red Ink Awards) has covered Kusum and Vivek story & their work. This video has already garnered over 3 million views.

> Developed e-learning course on “Cancer Fundamentals and Awareness” for Ministry of Health, Government of India

To help train millions of ground-level workers—including field health functionaries, social workers, hospital volunteers, and students working in even the most remote areas of India—Vivek collaborated with the Ministry of Education (Government of India) and the Indian Cancer Society, Delhi, to develop an e-learning course titled “Cancer Fundamentals and Awareness.” He authored two key modules: “Clinical Trials from a Patient’s Perspective” and “Best Practices for Cancer Caregivers” (featuring Kusum’s case study). These modules are now being taught across India through this e-course.

>Healthpost Medical Journal

Kusum and Vivek story and work as published in a medical journal “Healthpost”. Link below:

http://www.healthpost.in/medley/i-am-trying-to-shake-the-system-to-save-my-wife–92

> NDTV – leading English news channel

In a campaign to secure a life-saving medication for Kusum, Vivek joined a discussion on the “We the People” program, hosted by renowned journalist Barkha Dutt. The discussion featured key stakeholders, including clinicians, hospital representatives, industry experts, and government officials. You can view the discussion at the link below:

https://www.ndtv.com/video/news/we-the-people/we-the-people-clinical-trials-in-india-saving-or-risking-lives-445136

> Keynote Speaker at “National Lung Cancer Conference (NALCCON)”, India

A historic day for Patients Advocacy & Patients Empowerment in India, as first time in any medical conference in India:
– in 2018, Patient Advocacy became part of main scientific agenda during National Lung Cancer Conference 2018 in AIIMS Patna, which Vivek got honored to speak as patient advocate.
– in 2020, Vivek was invited as ‘Keynote speaker’ for 2020 National Lung Cancer Conference in Delhi. This was the first time ever any patient advocate was made Keynote speaker at national lung cancer conference.

It was great Engaging & Encouraging discussion with leading Medical Oncologists, Onco Surgeons, Radiation Oncologists, Pathologists, medical students, policy makers, media, Bollywood celebrities, social workers and industry in the national conference.

> Bloomberg

One of the world’s leading news agency ‘Bloomberg’ has released a story on India and its alarming problem of air pollution and having world’s most toxic air. For this story, Bloomberg has covered Kusum’ s Lung Cancer case too, as Kusum was a never-smoker and now there are ample studies to suggest air pollution as one of the main cause of lung cancer.

> Health Magazine – Techagappe

How Kusum & Vivek won with all odds…The story was published by a Health magazine “Techagappe”

Kusum story and clinical trials – Tech appe

> Viral video of Josh Talks 

Vivek and Kusum shared their story as speakers on Josh Talks, discussing their battle with cancer, the challenges within the healthcare system and how they navigate through it. You can watch the video at the link below.

In just a year, this video has gone viral, amassing millions of views across various platforms. It has not only inspired cancer patients and caregivers but has also offered hope and motivation to anyone facing challenges, encouraging them to rise up and confront their struggles.

Although Vivek and Kusum spoke in Hindi to reach a broader audience, including those in rural areas, English subtitles are available for non-Hindi speakers to follow along.

> Interactions and raising awareness with Industry and Researchers’ community

 

> Al Jazeera’s story on ‘Delhi’s Deadly Air Pollution’.

Vivek and Suryansh Tomar (Kusum and Vivek’s son) have supported and participate very important short film by globally renowned news agency ‘Al Jazeera’ on ‘Deadly Air Pollution’. This story is to understand on how this invisible killer ‘Air pollution’ killing us, over loved ones, kids and generations to come through lung cancer, respiratory diseases.

> National Cancer Grid

Vivek and Rise To Survive Cancer, as part of the National Cancer Grid, are collaborating with key stakeholders in India and the global community—including hospitals, the Government of India, and others—to prioritize patients’ voices and needs in discussions, decisions, and initiatives. At the NCG 2024 Annual Meeting, attended by over 300 esteemed leaders in oncology, public health, and research from 14 countries, as well as representatives from national and global organizations such as the National Health Authority, WHO, and ASCO, the focus was on strengthening cancer control across India and ASEAN. During this event, Vivek served as both a panelist and a founding team member of the newly established committee on Mental Health in Cancer Care.

> Advocacy for Research and Clinical Trials

Vivek is working tirelessly to raise awareness of Research and Clinical Trials in India while working with multiple key stakeholders and speaking on impactful platforms.

> Changemaker – Training new Patient Advocates ‘globally’

Vivek as the first Indian Patient Advocate to lead a workshop on Patient Advocacy for oncologists, researchers, and emerging patient advocates from across Asia at the Asia Lung Cancer Conference (ACLC) in Hong Kong. This platform provided an invaluable opportunity to become a changemaker to foster a transformative shift in patient advocacy for lung cancer across the Asia-Pacific region. It allowed me to bring together patient advocates from various countries, guiding and empowering them with the knowledge, experience, and tools they need to become more effective voices for change.

> Patient-Centric Public Health Advocate of the Year 2024

Vivek is bestowed with the prestigious title of “𝐏𝐚𝐭𝐢𝐞𝐧𝐭-𝐂𝐞𝐧𝐭𝐫𝐢𝐜 𝐏𝐮𝐛𝐥𝐢𝐜 𝐇𝐞𝐚𝐥𝐭𝐡 𝐀𝐝𝐯𝐨𝐜𝐚𝐭𝐞 𝐨𝐟 𝐭𝐡𝐞 𝐘𝐞𝐚𝐫” for 2024 at the 𝘗𝘢𝘵𝘪𝘦𝘯𝘵 𝘍𝘪𝘳𝘴𝘵 𝘚𝘶𝘮𝘮𝘪𝘵 𝘢𝘯𝘥 𝘈𝘸𝘢𝘳𝘥𝘴 ceremony, in the presence of hundreds of leading clinicians, industry leaders, policymakers, scientists, and society dignitaries. This recognition is particularly meaningful as it spans all disease areas—not just cancer—and acknowledges my volunteer work in patient advocacy, championing public health, and placing patients at the heart of care.

Run For Cause

Kusum, Vivek, and their son Suryansh regularly participated in running events to raise awareness about cancer as well as research. In memory of Kusum and to honor this noble cause, Suryansh and Vivek continue to take part in various events to advocate for the cause.